Hormone replacement therapy and osteoporosis

Sex hormones (principally testosterone or estrogen) are necessary to maintain healthy adult bones. Persons born without functioning gonads, or whose gonads have been removed, should be under an endocrinologist's care and should maintain hormone replacement therapy for life.

Many intersexuals, having developed a distrust or aversion for medical people, avoid medical care and drop hormone replacement therapy which was prescribed during puberty. This can result in extreme osteoporosis (brittle bones). Osteoporosis worsens silently, but at advanced stages it can destroy your quality of life. Persons with advanced osteoporosis are vulnerable to frequent bone fractures, especially of the spine, hip, and wrist. These fractures can be caused by a small amount of force, and are extremely painful and debilitating. Each spine fracture may put you flat on your back for one to two months.

If you have been without gonads or hormone replacement therapy for years, it is vital to get a bone density scan performed, to evaluate the condition of your bones (a simple, non-invasive procedure using a specialized x-ray machine), and to seek the advice of an endocrinologist in order to establish a regimen of hormone replacement therapy that works for you. If you have had bad experience in the past with hormones, we encourage you to find an endocrinologist who will work with you to adjust the mix and schedule of hormones until you find what works. If your bone density is low, your endocrinologist will probably recommend calcium supplements and weight-bearing exercise (not swimming!) to maintain density.

If your bone density scan is performed on a DEXA machine, make certain to do any follow-up scans on the same machine, and with the same reader.

A number of drugs currently in the biomedical news may prove useful for rebuilding lost bone density. If your bone density is low, check in with a qualified specialist regularly for the latest information.

The danger of osteoporosis is considerably worse for intersexuals than for post-menopausal women, because the intersexual will be without hormones for many decades. Do not disregard this danger!

Where can I read some of the earliest first person writings of intersexuals?

Personal narratives of intersex people are available in ISNA's newsletter, Hermaphrodites with Attitude, in a special issue of the magazine Chrysalis, and in the video Hermaphrodites Speak!.

Alvarado, Donna. "Intersex," West Magazine section of Sunday San Jose Mercury News, Jul 10, 1994.

Describes the life stories of Cheryl Chase and Morgan Holmes, based on personal interviews. Photos of Holmes. Opinions of intersex specialists Grumbach of UCSF and Gearhart of Hopkins (surgery is necessary to prevent parents from treating child as an outcast) are contrasted with personal experience of Chase and Holmes (surgery experienced as mutilation, causing sexual dysfunction). Anne Fausto-Sterling criticizes intersex specialists as unwilling to follow up patients to determine the outcome of their interventions.

"Once a dark secret," BMJ 1994; 308:542 (19 February).

A woman with XY karyotype and "testicular feminization" (androgen insensitivity syndrome) briefly relates how damaging she has found the secrecy surrounding her condition. "Mine was a dark secret kept from all outside the medical profession (family included) but this is not an option because it both increases the feelings of freakishness and reinforces the sense of isolation. It also neglects the need for the counselling of siblings."

"Gender identity in testicular feminization," BMJ 1994; 308:1041 (16 April).

This letter responds to "Once a dark secret" in the 19 Feb issue. The author discusses the issue of gender identity, criticizes the secrecy and the labeling of women with complete androgen insensitivity as "male" or "hermaphrodite."

"Be open and honest with sufferers," BMJ 1994 308:1042 (16 April).

The author of this letter has also been subjected to secrecy surrounding her androgen insensitivity. This secrecy produced a "lifetime of unnecessary secrecy, shame, delayed action, and great damage to my personal and sexual identity and self esteem."

Holmes, Morgan. See entries under "Where can I read deconstructions of the medical viewpoint?"

Horowitz, Sarah. "Both and Neither," SF Weekly, February 1, 1995.

For generations, doctors have been "fixing" babies born with ambiguous genitals. Now adult "intersexuals" wonder if their true identities have been surgically mutilated. The article doesn't take sides, and plays the "expert" doctors' opinions against our opinions. Needless to say, the doctors insist that no one can be allowed to remain intersexual, and we (Cheryl, Morgan, and David) assert that we are intersexual, and that we have been harmed by medicalization. Anne Fausto-Sterling takes our side, and Suzanne Kessler is "sympathetic" with ISNA's goals, but cautions that what doctors are doing is enforcing a cultural mandate, and that doctors are not likely to participate in a revolution.

Where can I read some of the earliest deconstructions of the medical viewpoint?

Alice Dreger, Harvard University Press. Hermaphrodites and the Medical Invention of Sex available from Amazon.com.

Alice Dreger, Assistant Professor of Science and Technology Studies at Michigan State University and adjunct faculty at the Center for Ethics and Humanities in the Life Sciences, brings us this study of how and why medical and scientific men have construed sex, gender, and sexuality as they have. A 36 page long epilogue contains narratives of intersexuals treated according to the still-standard medical protocols developed in the 1950s and calls for change: "Surely, ...it will be familiarity rather than knowlege that finally takes away [intersexuals'] supposed 'strangeness.'"

Fausto-Sterling, Anne. "The Five Sexes: Why Male and Female are Not Enough," The Sciences, March/April 1993:20-24. Reprinted on New York Times Op-ed page, March 12, 1993. See also the Letters from Readers in the July/August 1993 issue.

Fausto-Sterling questions the medical dogma that, without medical intervention, hermaphrodites are doomed to a life of misery. What would be the psychological consequences of raising children as unabashed intersexuals? Imagine a society in which sexuality is celebrated for its subtleties and not feared or ridiculed. The author's acceptance of the Victorian classification of intersexuals as male, female, and true pseudo-hermaphrodites is unfortunate, as is her naivite about the success of surgical intervention.

Holmes, Morgan. "Re-membering a queer body," Undercurrents, May 1994: 11-13. Published by Faculty of Environmental Studies, York University, 4700 Keele St, North York, Ontario Canada M3J 1P3.

Ms Holmes, who was subjected during childhood to "clitoral recession" surgery which removed most of her clitoris, analyzes the cultural imperative to surgically alter intersexual children's genitals. "The medical definition of what female bodies do not have and must not have: a penis. Any body which does possess a penis must either be designated 'male' or surgically altered. ... In the minds of doctors, bodies are for procreation and heterosexual penetrative sex. ... I would have liked to have grown up in the body I was born with, to perhaps run rampant with a little physical gender terrorism instead of being restricted to this realm of paper and theory. Someone else made the decision of what and who I would always be before I even knew who and what I was."

Holmes, Morgan. "Medical Politics and Cultural Imperatives: Intersexuality Beyond Pathology and Erasure," Master's Thesis, Interdisciplinary Studies, York University, September 1994.

Kessler, Suzanne. "The Medical Construction of Gender: Case Management of Intersexed Infants." Signs: Journal of Women in Culture and Society, 16(1) (1990):3-26.

Ms Kessler interviewed six medical specialists in pediatric intersexuality to produce an account of the medical decision making process. She describes the processes by which cultural assumptions about sexuality in effect supersede objective criteria for gender assignment. Kessler concludes that the key factor in making a decision is whether or not the infant has a "viable" penis.

Lee, Ellen Hyun-Ju. "Producing Sex: An Interdisciplinary Perspective on Sex Assignment Decisions for Intersexuals," Senior Thesis, Human Biology: Race and Gender, Brown University, April 1994.

Ms Lee ananalyzes medical literature for clinical recommendations concerning the diagnosis and treatment of intersexed infants, while invoking deconstructive feminist theory to critique the medical "management" of ambiguous genitalia. Her interdisciplinary approach places intersexuality within a broader discourse of sex and gender, disputing the binary male/female opposition as a social construction. Especially valuable is her transcription of an interview with "Dr Y," an intersex specialist/clinician who acceded to be interviewed about gender assignment only under the condition that his identity be disguised.

more: Frequently Asked Questions from Non-Intersexed People

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